Klin Padiatr 2018; 230(03): 130-137
DOI: 10.1055/a-0586-8921
Original Article
© Georg Thieme Verlag KG Stuttgart · New York

Fear of Progression in Parents of Children with Cancer: Results of An Online Expert Survey in Pediatric Oncology

Progredienzangst bei Eltern krebskranker Kinder: Ergebnisse einer Online-Expertenbefragung in der Pädiatrischen Onkologie
Katharina Clever
1   Department of Pediatric Oncology, Hematology and Hemostaseology, University of Leipzig, Leipzig, Germany
,
Florian Schepper
1   Department of Pediatric Oncology, Hematology and Hemostaseology, University of Leipzig, Leipzig, Germany
,
Luise Küpper
1   Department of Pediatric Oncology, Hematology and Hemostaseology, University of Leipzig, Leipzig, Germany
,
Holger Christiansen
1   Department of Pediatric Oncology, Hematology and Hemostaseology, University of Leipzig, Leipzig, Germany
,
Julia Martini
2   Department of Child and Adolescent Psychiatry, Faculty of Medicine, Technische Universität Dresden, Dresden, Germany
3   Institute of Clinical Psychology and Psychotherapy, Technische Universität Dresden, Dresden, Germany
› Author Affiliations
Further Information

Publication History

Publication Date:
19 April 2018 (online)

Abstract

Background Fear of Progression (FoP) is a commonly reported psychological strain in parents of children with cancer. This expert survey investigates how professionals in pediatric oncology estimate the burden and consequences of FoP in parents and how they assess and treat parental FoP.

Method N=77 professionals in pediatric oncology (members and associates of the Psychosocial Association in Paediatric Oncology and Haematology, PSAPOH) were examined in an online survey with a self-developed questionnaire. Data were analyzed via descriptive statistics and qualitative content analysis.

Results Three of four experts in clinical practice were (very) often confronted with parental FoP which was associated with more negative (e. g., psychosomatic reactions, reduced family functioning) than positive (e. g., active illness processing) consequences. N=40 experts indicated that they mainly assess parents’ anxiety via clinical judgment (72.5%) and/or according to ICD-10/DSM-5 diagnostic criteria (37.5%), whereas standardized methods such as psycho-oncological questionnaires (12.5%) were applied less often. Only n=6 experts named a specific diagnostic approach to assess parental FoP. The most common treatment approaches for FoP were supportive counseling (74.0%), psychotherapy (59.7%) and/or relaxation techniques (55.8%).

Discussion Parental FoP is frequently perceived by experts in clinical practice. A standardized diagnostic procedure would increase comparability of diagnostic judgments and harmonize treatment indications.

Zusammenfassung

Hintergrund Progredienzangst (PA) gehört zu den häufigsten psychischen Belastungen bei Eltern krebskranker Kinder. In dieser Studie wurden Experten hinsichtlich der Auftretenshäufigkeit und Konsequenzen von PA bei Eltern sowie zur diagnostischen Erfassung und Behandlung elterlicher PA befragt.

Methode N=77 Mitglieder und assoziierte Kollegen der Psychosozialen Arbeitsgemeinschaft in der Gesellschaft für Pädiatrische Onkologie und Hämatologie (PSAPOH) wurden mit einem selbstentwickelten Online-Fragebogen befragt. Es wurden Häufigkeitsanalysen sowie eine qualitative Inhaltsanalyse durchgeführt.

Ergebnisse Drei von vier Experten wurden in ihrer klinischen Tätigkeit (sehr) oft mit elterlicher PA konfrontiert und gaben mehr negative (z. B. psychosomatische Reaktionen, eingeschränkte Familienfunktion) als positive (z. B. aktive Krankheitsverarbeitung) Konsequenzen elterlicher PA an. N=40 Experten gaben an, elterliche Ängste vor allem durch klinisches Expertenurteil (72.5%) bzw. anhand diagnostischer Kriterien nach ICD-10/DSM-5 (37.5%) zu erfassen, während der Einsatz standardisierter Instrumente wie psychoonkologische Fragebögen (12.5%) seltener angegeben wurde. Nur n=6 Experten nannten einen spezifischen diagnostischen Ansatz zur Erfassung elterlicher PA. Supportive Beratung (74.0%), Psychotherapie (59.7%) und/oder Entspannungstechniken (55.8%) wurden als gängige Behandlungsansätze für PA genannt.

Diskussion PA wird bei Eltern krebskranker Kinder von Experten sehr oft beobachtet. Ein standardisiertes diagnostisches Vorgehen könnte klinische Urteile vergleichbar machen und Behandlungsempfehlungen vereinheitlichen.

 
  • References

  • 1 Anclair M, Hovén E, Lannering B. et al. Parental fears following their child's brain tumor diagnosis and treatment. J Pediatr Oncol Nurs 2009; 26: 68-74
  • 2 Clever K, Schepper F, Pletschko T. et al. Psychometric properties of the Fear of Progression Questionnaire for parents of children with cancer (FoP-Q-SF/PR). J Psychosom Res 2018; 107: 7-13
  • 3 Dankert A, Duran G, Engst-Hastreiter U. et al. Progredienzangst bei Patienten mit Tumorerkrankungen, Diabetes mellitus und entzündlich-rheumatischen Erkrankungen. Rehabilitation 2003; 42: 155-163
  • 4 Eccleston C, Fisher E, Law E et al. Psychological interventions for parents of children and adolescents with chronic illness (Review). Cochrane Libr 2015
  • 5 Eiser C, Eiser JR, Greco V. Surviving childhood cancer: Quality of life and parental regulatory focus. Pers Soc Psychol B 2004; 30: 123-133
  • 6 Herschbach P, Berg P, Dankert A. et al. Fear of progression in chronic diseases: Psychometric properties of the Fear of Progression Questionnaire. J Psychosom Res 2005; 58: 505-511
  • 7 Herschbach P, Dinkel A. Fear of Progression. In: Goerling U. (Hg.) Psycho-Oncology, Bd. 197: Recent Results in Cancer Research. Berlin, Heidelberg: Springer; 2014
  • 8 Kazak AE, McClure KS, Alderfer MA. et al. Cancer-related parental beliefs: The Family Illness Beliefs Inventory (FIBI). J Pediatr Psychol 2004; 29: 531-542
  • 9 Kazak AE, Barakat LP, Hwang W-T. et al. Association of psychosocial risk screening in pediatric cancer with psychosocial services provided. Psycho Oncol 2011; 20: 715-723
  • 10 Kazak AE, Brier M, Alderfer MA. et al. Screening for psychosocial risk in pediatric cancer. Pediatr Blood Cancer 2012; 59: 822-827
  • 11 Kazak AE, Abrams AN, Banks J. et al. Psychosocial assessment as a standard of care in pediatric cancer. Pediatr Blood Cancer 2015; 62: S426-S459
  • 12 Kazak AE, Noll RB. The integration of psychology in pediatric oncology research and practice: Collaboration to improve care and outcomes for children and families. Am Psychol 2015; 70: 146-158
  • 13 Kearney JA, Salley CG, Muriel AC. Standards of psychosocial care for parents of children with cancer. Pediatr Blood Cancer 2015; 62: S632-S683
  • 14 Landis JR, Koch GG. The Measurement of Observer Agreement for Categorical Data. Biometrics 1977; 33: 159-174
  • 15 Landolt MA, Vollrath M, Niggli FK et al. Health-related quality of life in children with newly diagnosed cancer: A one year follow-up study. Health Qual Life Out 2006; 4:
  • 16 Ljungman L, Cernvall M, Grönqvist H. et al. Long-term positive and negative psychological late effects for parents of childhood cancer survivors: A systematic review. PLOS ONE 2014; 9: e103340
  • 17 Mayring P. Qualitative Inhaltsanalyse. Grundlagen und Techniken. 12. Aufl Weinheim: Beltz; 2015
  • 18 Mitchell AJ, Vahabzadeh A, Magruder K. Screening for distress and depression in cancer settings: 10 lessons from 40 years of primary-care research. Psycho-Oncol 2011; 20: 572-584
  • 19 Orbuch TL, Parry C, Chesler M. et al. Parent-child relationships and quality of life: Resilience among childhood cancer survivors. Fam Relat 2005; 54: 171-183
  • 20 Pai ALH, Lewandowski A, Youngstrom E. et al. A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol 2007; 21: 407-415
  • 21 Quin S. The Long-term psychosocial effects of cancer diagnosis and treatment on children and their families. Soc Work Health Care 2004; 39: 129-149
  • 22 Schepper F, Abel K, Herschbach P. et al. Progredienzangst bei Eltern krebskranker Kinder: Adaptation eines Fragebogens und Korrelate. Klin Padiatr 2015; 227: 151-156
  • 23 Schröder HM, Lilienthal S, Schreiber-Gollwitzer BM et al. Psychosocial Care in Paediatric Oncology and Haematology AWMF-guideline reg. no. 025/002, 2013, retrieved June 8th 2017 from: http://www.kinderkrebsinfo.de/sites/kinderkrebsinfo/content/e2260/e5902/e61332/e130185/
  • 24 Simard S, Thewes B, Humphris G. et al. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv 2013; 7: 300-322
  • 25 Sint Nicolaas SM, Schepers SA, van den Bergh EMM. et al. Illness cognitions and family adjustment: Psychometric properties of the Illness Cognition Questionnaire for parents of a child with cancer. Support Care Cancer 2016; 24: 529-537
  • 26 Thewes B, Butow P, Bell ML. et al. Fear of cancer recurrence in young women with a history of early-stage breast cancer: A cross-sectional study of prevalence and association with health behaviours. Support Care Cancer 2012; 20: 2651-2659
  • 27 Thewes B, Brebach R, Dzidowska M. et al. Current approaches to managing fear of cancer recurrence; a descriptive survey of psychosocial and clinical health professionals. Psycho-Oncol 2014; 23: 390-396
  • 28 Van Dongen-Melman JEWM. Pruyin JFA, De Groot A. et al. Late psychosocial consequences for parents of children who survived cancer. J Pediatr Psychol 1995; 20: 567-586
  • 29 Van Schoors M, Caes L, Verhofstadt LL. et al. Systematic review: Family resilience after pediatric cancer diagnosis. J Pediatr Psychol 2015; 40: 856-868
  • 30 Waadt S, Duran G, Berg P. et al. Progredienzangst: Manual zur Behandlung von Zukunftsängsten bei chronisch Kranken. Stuttgart: Schattauer; 2011
  • 31 Werner A, Stenner C, Schüz J. Patient versus clinician symptom reporting: How accurate is the detection of distress in the oncologic after-care?. Psycho-Oncol 2012; 21: 818-826